Life after brain injury: Patients and caregivers cope with ‘hidden’ disabilities

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Jane Parks-McKay and her husband, Tim McKay with their dog, Luka, at Jade Street Park in Capitola, Calif., Wednesday, Jan. 20, 2016. Nine years ago, robotics engineer Tim McCay of Santa Cruz was at work, getting into his car, when he bumped his head on a door frame fairly hard. While he was able to drive home, he was mildly confused -- a sign that he had suffered a pretty severe injury that would leave him with permanent memory problems and an unsteady gate that would make it impossible for him to keep working and a challenge to do a lot of day-to-day things, like help take care of the house. (Patrick Tehan/Bay Area News Group)

Jane Parks-McKay and her husband, Tim McKay with their dog, Luka, at Jade Street Park in Capitola, Calif., Wednesday, Jan. 20, 2016. Nine years ago, robotics engineer Tim McCay of Santa Cruz was at work, getting into his car, when he bumped his head on a door frame fairly hard. While he was able to drive home, he was mildly confused -- a sign that he had suffered a pretty severe injury that would leave him with permanent memory problems and an unsteady gate that would make it impossible for him to keep working and a challenge to do a lot of day-to-day things, like help take care of the house. (Patrick Tehan/Bay Area News Group)

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Jane Parks-McKay and her husband, Tim McKay at Jade Street Park in Capitola, Calif., Wednesday, Jan. 20, 2016. Nine years ago, robotics engineer Tim McCay of Santa Cruz was at work, getting into his car, when he bumped his head on a door frame fairly hard. While he was able to drive home, he was mildly confused -- a sign that he had suffered a pretty severe injury that would leave him with permanent memory problems and an unsteady gate that would make it impossible for him to keep working and a challenge to do a lot of day-to-day things, like help take care of the house. (Patrick Tehan/Bay Area News Group)

The other day, Jane Parks-McKay put on a pot of water to boil macaroni. She lit the flame, then noticed some grease ringing the burner.

An idea popped into her head that seemed perfectly sensible in the moment. She got a wad of paper towels coated with vinegar and started cleaning, with the flame still burning. It wasn’t until she almost set the kitchen on fire that another thought, fortunately, popped into her head: water.

Parks-McKay, 63, says blips in judgment are regular hazards of everyday life ever since she suffered a mild brain injury when she whacked her head on the door frame of an SUV in December.

It wasn’t her first head bump, but it was especially worrisome, because it left her with temporary speech and lingering attention problems. She’s also the caregiver for Tim McKay, her husband of nearly 40 years, who himself lives with the residual effects of an even more disabling head injury from 2007. He, too, smacked his head on the door frame of a car and continues to deal with memory and cognitive deficits.

While there’s growing awareness about the dangers of concussions in athletes or head injuries in war veterans returning from Iraq and Afghanistan, many of us are still unaware of the impact of these injuries, which can last for days — or the rest of a person’s life. Head injuries can impair thinking, memory, movement, vision, hearing, personality and emotional function, the Centers for Disease Control and Prevention reports. And while most head bumps leave you with little more than a sore spot or headache, the severity of the bump and the way it may or may not affect you make head injuries one of medicine’s most mysterious maladies.

The McKays say most people who meet them wouldn’t guess at their disabilities. On a sunny afternoon between January rain storms, the two are chatty and articulate as they sit on a park bench near their Capitola cottage, discussing their bumps and impairments.

In referring to themselves as “high-functioning,” the McKays represent how anything from mild to severe brain injuries can affect people in unpredictable, puzzling and “unseen” ways, says Michael Weber, a senior neuropsychologist at Alta Bates Summit Medical Center’s Acute Rehabilitation Program in Oakland. Unfortunately, these hidden effects make if difficult for patients, caregivers, the general public — even doctors sometimes — to understand how people’s lives can be transformed by head trauma.

“I have problems finding the right words sometimes,” says Debi Palmer, founder of Brain Injury Connection, a support network for brain-injured people and caregivers. She was first injured in 1992, when she stopped to get off her bike in an intersection while riding through her hometown of Alameda.

For reasons she can’t remember, Palmer, then 35, fell and hit her head on the asphalt. Besides causing two weeks of amnesia, the fall also left her extremely tired for months on end. After returning to her job as a transportation management specialist for the Department of Defense, the once-fastidious Palmer couldn’t keep her desk organized. She also was forgetful, and co-workers said her personality changed.

At that time, neither she nor her bosses knew what to make of her forgetfulness and irritability. Palmer also didn’t get much help from doctors, who failed to link her symptoms to her fall and order appropriate treatment and rehabilitation. She eventually had to retire on disability after her supervisor told her to “find the sweet, smiling Debi we used to know.”

“The mistakes you make really take away from the quality of life,” she says. It changed her life, “and no one understood what I was going through, including me.”

Brain injuries — a factor in 2.5 million emergency room visits, hospitalizations and deaths, according to the CDC — are a major cause of death and disability in the United States. In 2010, about 40 percent were caused by falls. Viet Nguyen, a neurologist with Stanford Health Care, says that many patients hurt themselves in what he calls “nondramatic incidents.”

“I had a lady who hurt her head falling out of a bed,” he said.

Some might remember actress Natasha Richardson, who in 2009, bumped her head when she fell while skiing down the a bunny slope. She initially laughed it off, but hours later, a crushing headache signaled an epidural hematoma, blood accumulating between the skull and the membrane covering the brain.

At the time, neurologists called the rapid onset of dangerous bleeding in Richardson’s case uncommon. They also were careful to point out that most routine head bumps aren’t dangerous. Still, they cited Richardson’s situation as an example of how the seeming severity of an incident doesn’t predict the outcome or duration of symptoms.

Nguyen adds that it’s not well understood why some brain-injured people easily recover from serious car crashes, while others are left with lasting disabilities after what seems to be a mild hit.

“It is probably a combination of the mechanism of injury, pre-existing medical conditions and genetics,” he says. Certainly, the medical care people receive is an important factor, which is why he and others stress the importance of early diagnosis and treatment.

And, both he and Weber weren’t shocked to hear that the McKays were hurt by bumping their heads on car door frames.

“We’ve had more than a few of those,” says Weber. “Instead of backing out all the way when getting out of the car, they stand up and — whack!”

Older adults are especially susceptible to falling or bumping into things because of medical conditions. And once someone suffers a concussion, they become more prone to suffering another if they hit their heads again.

Since her injury in December, Parks-McKay says it’s easy for her attention to wander even while she is doing something simple around the house.

“You’re walking down the hallway and thinking of what you’re going to do next,” says Parks-McKay, a former journalist and business owner. “Your brain is multitasking, and you don’t notice that corner, then you clip that corner and crash into things.”

For much of his life, McKay, 67, thought he was absent-minded, as when his mother sent him out to the store and he’d return empty-handed. Now, both he and Parks-McKay suspect his “absent-minded professor” persona probably had something to do with sustaining brain injuries throughout his life.

At 2, McKay fell and hit his head on a cement basement floor. At 12, he was in a coma after a bicycle accident and had to learn to speak again. At 18, he was rear-ended in a car accident.

McKay’s door-frame collision at age 58 set him on new series of head bumps. In the immediate aftermath of the injuries, he became so fatigued and forgetful he had to stop working. Years later, he still takes long naps, and his brain is prone to “flooding,” a sense of his mind being overloaded with thoughts or sensory input. He’s been helped by speech and language therapy — which for many brain injury survivors has less to do with improving speech and more to do with boosting attention, memory, organization and problem solving.

In his high-functioning way, McKay can drive himself to doctors’ appointments. But in his brain-injured way, it’s best if Parks-McKay or someone else accompanies him, because he’ll forget what to tell the doctor or what the doctor recommends for treatment.

McKay also points out that some brain-injured people may be able to accomplish many of the same things they used to. It just takes much more energy to finish a task, which means they can’t do all the things in a day that they once did.

“Your brain is like a CPU, or like it has limited bandwidth,” Parks-McKay says.

Maybe the most she can do in a day is call the IRS to get tax information, but she can’t also clean, cook meals or walk their two dogs.

Following her husband’s 2007 injury, Parks-McKay had to give herself over to being a caregiver, which was very stressful. She said she would become depressed or angry when her husband slept all the time, forgot things or couldn’t help around the house. She admits it was just as difficult for her, as it was for outsiders, to appreciate how his changed behavior wasn’t him being lazy or not trying hard enough — it was the injury.

Weber agrees that brain injuries are incredibly hard on caregivers. He has facilitated the Caregiver Support Group as part of the Life Skills program at Alta Bates.

“I had one very thoughtful woman in her 40s who said about her husband, ‘It looks like him, the voice is the same, but that’s not my husband.'” For other couples, “the expectation for what future would be is now gone,” he says.

Around the time that Parks-McKay suffered her own injuries, she was starting to come to terms with how life with her husband had changed. Now she tries as much as possible to not dwell how things used to be.

“If I look back and compare how I am now with how I was, or how our marriage was, or how Tim was, it can get very depressing,” she says. “It is what it is. You deal with the here and now and the future.”

Brain injury help

These organizations offer information, support and other services to people in the Bay Area with brain injuries, their families and other caregivers:

Martha Ross is a features writer who covers everything and anything related to popular culture, society, health, women’s issues and families. A native of the East Bay and a graduate of Northwestern University and Mills College, she’s also a former hard-news and investigative reporter, covering crime and local politics.

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